THE IMPORTANCE OF PHYSICAL ACTIVITY

DIVISION AWARDS

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After a summer chockfull of fundraising events for the MS Society, I was impressed again by how lucky we are to be able to count on such dedicated donors, volunteers and participants. The MS community, which continues to grow, is a very committed group. These are the people who allow us to pursue our mission, with constantly renewed energy.

We recently learned that there are now 100,000 Canadians with multiple sclerosis. Without any doubt, this statistic represents a significant increase, inciting us to redouble our efforts. Nevertheless, we are delighted to note that recent years have been highly productive for research. We now understand the disease better. Neurologists are now able to offer a greater variety of treatments than ever before and they have more tools enabling them to quickly determine whether someone has MS.

People who are affected by MS are the core of our concern. That’s why making research as accessible as possible is important to us.

The virtual event we organized last June with Dr. Grand’Maison is a good example of this. It was an online presentation on the MS Society’s website and Facebook page of a talk about current and future multiple sclerosis treatments. The

talk was followed by an online chat session with the neurologist. We were happy to see how many of you were interested in this event. Close to 2,500 of you watched the presentation—a real success.

In addition, we are pleased to welcome the third endMS Conference to Quebec; it will be held from December 10 to 13, 2013, in Saint-Sauveur. Launched as part of the endMS Campaign in 2007, this national event is held every three years. This conference will bring many well-known researchers together in order to promote the sharing of knowledge on MS research and networking and collaborative activities among the researchers and trainees in attendance.

We are proud to have contributed to the significant progress achieved in recent years by financing leading-edge research projects, while also providing information and support to people affected by multiple sclerosis. It goes without saying that the battle against multiple sclerosis continues, but I have every hope that together we will succeed in beating this disease. MS

Louis Adam

Message from the Executive Director

ISSN: 0822-5702Published by: Multiple Sclerosis Society of Canada, Quebec Division550 Sherbrooke St. West, East TowerSuite 1010, Montreal, Quebec H3A 1B9Tel.: 514 849-7591 or 1 800 268-7582Fax: 514 849-8914 or 1 877 387-7767E-Mail: info.qc@mssociety.ca Website: mssociety.ca/qc

Editor: Céline PatenaudeAssistant Editor: Jeanne Sanchez-BradleyExecutive Director: Louis AdamLegal Deposit – Bibliothèque et Archives nationales du Québec, 1989Legal Deposit – Library and Archives CanadaThank you to all our collaborators. Désirez-vous recevoir votre revue en français ? Composez le 514 849-7591 ou le 1 800 268-7582.

Member of:POUR POSITION

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Since 1995, I have been learning to live with the symptoms of multiple sclerosis. When I was diagnosed, based on the knowledge at the time, my neurologist advised me to avoid physical exercise and not move around much. Since then, I have been hospitalized many times, which has limited my ability to walk. Then I started doing physical therapy to get back my life and my activities.

Today, multiple sclerosis research has evolved considerably and specialists agree that it is important to continue exercising in order to optimize mobility in limbs.

Over the past four years, I have gradually incorporated exercise into my life while learning to manage fatigue. The first times I went for a walk, I sometimes forgot to consider the return distance. Slowly, I learned to respect my limits, be reasonable, and take things one minute at a time.

Now I can go for walks in Old Quebec City, I can swim and bicycle. Thanks to physical exercise, today I am doing quite well. I have even started climbing stairs.

With specialists’ help, I have designed an exercise program for my state of health. To my great joy, I am gradually doing many things that I believed impossible and I am regaining control of my life.

With perseverance, we can avoid getting discouraged and appreciate all the happy times life holds in store for us, in spite of multiple sclerosis.

The greatest pleasure is taking care of our bodies so we can enjoy all that life has to offer, every day, with the people we love.

Life is good: we have to take care of ourselves! MS

The Importance of Physical Activity

Two Virtual EventsOn June 25 and 27, the MS Society organized two unique virtual events for the MS community!

First, the public was invited to view an online conference on the MS Society’s website and Facebook page about current and future treatments for multiple sclerosis by Dr. François Grand’Maison, neurologist and Director of the Neuro Rive-Sud MS clinic.

An online session with Dr. François Grand’Maison followed on the MS Society’s Facebook page. The doctor was pleased to answer the public’s questions about current and future treatments for MS. For those who wish to view the online conference (in French only), visit youtube.com/SocieteSPCanada.

We wish to thank all the participants for their lively interest, which made both virtual events resoundingly successful!

The Quebec Division of the MS Society thanks Biogen Idec, sponsor of this virtual event, for its generous contribution. MS

By Michel Grenon

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A delegation from the MS Society visited the National Assembly on May 22, 2013, to hold an MS awareness day. The goal of this event was to make Members of the National Assembly aware of the issues related to this disease, and particularly the insecure financial situation of MS clinics.

We took advantage of the presence of a dozen MNAs at a breakfast meeting to talk about the lack of financing for multiple sclerosis clinics and the role they play in Quebec. A memorandum on the current status of MS clinics, which was in preparation at the time, was then presented to the political attaché for Réjean Hébert, Minister of Health and Social Services and Minister responsible for Seniors. This document describes in detail the consequences of the inadequate financing of MS clinics for the quality of life of people with MS and the apportionment of the burden of the disease within the health care system.

Réjean Hébert proposed a motion to salute our visit to the National Assembly, showing his solidarity with people with MS and acknowledging the MS Society’s work.

We would like to thank the members of the delegation: • DenisBaribeau,personwithmultiplesclerosis;• JocelyneCazin,MSSocietyAmbassador;

• Dr.PierreDuquette,neurologistanddirector of the CHUM multiple sclerosis clinic;• IsabelleJalbert,nursecoordinator,Charny MS clinic;• HanaSalaheddine,personwithmultiple sclerosis.

Louis Adam, Executive Director of the Quebec Division, and Nadine Prévost, Director of Services and Social Action at the Quebec Division, also attended.

You can read the memorandum and listen to the motion (in French only) at the following link: mssociety.ca/qc/about/social-action.html. MS

Denis Baribeau, Jocelyne Cazin, Dr. Pierre Duquette, Isabelle Jalbert and Louis Adam at the National

Assembly. (Absent from photo – Hana Salaheddine and Nadine Prévost)

A DAY AT THE NATIONAL ASSEMBLY

Seeking an Increase in the Resources Allocated to MS Clinics

NEW PUBLICATION

The MS Society is producing a new physical activity guide to encourage people with MS to engage in physical activity.

Once it is published, you will be able to consult the guide online at mssociety.ca/qc/services/Publications-MS.html or obtain a copy by contacting the Quebec Division of the MS Society. This initiative was made possible by a grant from Biogen Idec.

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Urinary dysfunctions related to MS are common; they impair the quality of everyday life and can cause complications, especially of the kidneys. This article covers the importance of urological monitoring and urodynamic testing, which can help prevent the main urinary complications.

The four main risk factors that can lead to a major urinary tract dysfunction in people with MS are as follows: duration of the disease, use of a catheter, intense bladder spasms, and high bladder pressure. In addition, poor coordination between the sphincter and the bladder, being a man, and being more than 50 years old can contribute to unfavourable developments. All these factors justify long-term urological monitoring.

Urological monitoring may involve in-depth examinations. Often, a measurement of post-micturition residue will be required. The urologist may also demand a urodynamic test, which, in addition to a clinical examination, a voiding calendar and other complementary investigations, will make it possible to detect and analyze urinary problems (urinary incontinence, overly frequent urination, urgency, painful urination, need to push in order to urinate, etc.).

A urodynamic test, which is done on patients with their feet in gynecological stirrups or in a semi-seated position, generally includes the three steps described below:

1. Flow measurement, which consists in measuring the power of the flow and the regularity of urination. Most of the time, the patient will sit on a toilet seat that is connected to a flow measurement device.

2. Cystometry, which records the pressure exerted in the bladder when it is voided and when it refills. A fine-calibre catheter, which is introduced into the bladder through the urethra, makes it possible to gradually fill it with sterile water. This examination also involves simultaneously measuring abdominal pressure with a sensor placed in the rectum and, often, recording the activity of the urethral sphincter using stick-on electrodes.

3. Profilometry (unsystematic), which is intended to record the pressure experienced by the urethra. Once this step is completed, the catheter is gradually removed from the bladder.

Urodynamic testing takes about an hour and does not require hospitalization or anaesthesia. You can resume all your normal activities after this series of tests and you won’t have to change your habits or fast before it. However, it is desirable to avoid urinating for an hour before taking the test and to move your bowels earlier that day. You will be asked to have a urinalysis the week before, since urodynamic testing cannot be done if you have a urinary tract infection. (Any infection must be treated beforehand.) And because some medications change the bladder’s behaviour, you must bring a list of all the drugs you’re taking. MS

The Importance of Urological Monitoring in People with MS

This document is an adaptation of an information sheet created by three learned societies based in France: the Association française d’urologie (AFU), the Société interdisciplinaire francophone d’urodynamique et de pelvi-périnéologie (SIFUD-PP) and the Groupe d’étude de neuro-urologie de langue française (GENULF). Use is permitted to promote the dissemination of information and patient safety with health care professionals.

By Dr. Martine Jolivet, Urologist and Director of Neuro-urology and the CHUM Urodynamic Laboratory

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Division Awards

President’s Award Recipient: Dina Lachapelle

Dina Lachapelle accepted this award with humility. Thirteen years ago, she turned the shock of being diagnosed with MS into commitment. She quickly got involved in the Laval Chapter, where she has since become a member of the board. MS gave Dina’s life a new intensity, “like a whirlwind,” she says. “We know, but we don’t want to know.” Dina has a single purpose, to find the cure for MS. Humility goes a long way. MS

Paulette and Richard Lemire Award Recipient: Roger Charest

Roger Charest is an extraordinary man—not according to him, but his peers. Active participation, accumulated successes, attention to detail and collaboration are some of the admiring words his colleagues used to describe him. During his first Walk of Hope in Ste-Félicité, in 2010, Roger Charest did not think that he would put as much feeling as he did into developing the Matane Regional County Municipality. Year after year, the activities grew in popularity and people became more aware of the cause through his dynamism. Since then, the Roger Charest Walk was his way to bring people together and raise $64,000 for the cause.

A person of integrity who is generous with his time, Roger Charest is quick to walk, dance and organize picnic lunches for the cause. His slogan: Raise awareness to help better. In the Bas-Saint-Laurent Chapter, hope has a name. MS

Roger Charest receives the Paulette and Richard Lemire Award, presented by Louis Adam, Executive Director of the Quebec Division of the MS Society.

Dina Lachapelle receives the President’s Award, presented by Louis Adam, Executive Director of the Quebec Division of the MS Society, and François Coupal, Chair of the Board of Directors of the Quebec Division of the MS Society.

After arriving in Geneva on July 25, ACDA’s team in the Tour de France Challenge, made up of Louis-Philippe Baillargeon, Denis Choquette, Robert Dauphinais, Gilles Dionne, Richard Massé and Josée Vigneault, cycled the roads of France for ten days and raised $64,000 for the benefit of the Multiple Sclerosis Society of Canada. Congratulations to the cyclists in the 2013 MS Tour de France Challenge who so brilliantly defended ACDA’s team colours as they pedalled the high passes and dizzying descents of the Alps! MS

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Opal Award for caregivers Recipient: Jacqueline Perron

Jacqueline Perron is a fighter. For 33 years, she and her husband Richard have been fighting MS. Life did not give them much of a break, as they were tested before that by the death of their ill son when he was only 21. Even with all these demands on her time at home, Jacqueline worked. She was an operator in a fur company. Later, she left that job to become a school crossing guard, which required less time outside the home. Then one day, because of how demanding Richard’s treatment had become, the couple had to live apart; Jacqueline at home and Richard in a hospital centre. Richard has been placed since November 30, 2005. Every day since, Jacqueline

makes sure her husband has supper and spends all her evenings with him. Despite everything, Jacqueline and Richard move forward in life with disarming serenity. Above and beyond hope, there is love. MS

Division Award of Merit – Non-Member Recipient: Josée Vigneault

It would be an understatement to say that Josée Vigneault doesn’t take it easy. This volunteer is nurse coordinator of multiple sclerosis in Trois-Rivières. Josée monitors 1,250 patients and also helped open four clinics. For her, any and every means to raise money for the cause is fine: give lectures, scale Mount Kilimanjaro and Mount Acotango, participate in the MS Bike Tour and even stick sponsor decals on her car. In 2012, she received the Florence award from the Ordre des infirmières et infirmiers du Québec for her community involvement. Since we gave her this award, Josée has moved enthusiastically ahead with her series of MS Adventure Challenges. She took part in the MS Tour de France Challenge in July 2013 and will participate in the MS Everest Base Camp Challenge in October 2014.

We would also like to thank Josée and congratulate her on finishing eighth among the 20 finalists in Walmart’s Mom of the Year contest, thereby winning $10,000 for the MS Society. And who knows? Given her determination and dedication, Josée may come in first in the final round, which would mean a $100,000 donation for the MS Society. MS

Division Award of Merit – Member Recipient: Sylvie Desautels

Some people manage to turn adversity into energy. Sylvie Desautels is one of them. After being diagnosed with MS in 1998, Sylvie put together her MS Walk team in the Montérégie Chapter, called Les p’tits anges de Sylvie. The name was inspired by a quote: Friends are angels who lift us up when our wings no longer remember how to fly. No wonder those little angels have raised admiration as well as more than $123,000 since 2002. In total, 461 walkers joined her over the years to support the cause. Sylvie is a source of

inspiration and courage. Despite the difficult times and many bereavements she has had to face due to the progression of her disease, her good humour is contagious and nothing stops her. MS

Jacqueline Perron receives the Opal Award, presented by Louis Adam, Executive Director of the Quebec Division of the MS Society, and Luc Hébert, Chair of the Est-de-Montréal chapter of the MS Society.

Sylvie Desautels receives the Division Award of Merit – Member, presented by Laurence Barbarese, Financing Coordinator at the Montérégie chapter of the MS Society.

Josée Vigneault receives the Division Award of Merit – Non-Member.

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There’s still time to register for the 22nd congrès Espoir famille on October 25 to 27, 2013, at the Lévis Convention and Exhibition Centre.

The congrès Espoir famille gives people with MS and their families an opportunity to meet, share experiences and help each other cope with MS.

Workshops will deal with the following topics: symptoms of MS, mobility problems, pain management, nutrition, the physiological benefits of exercise, listening and communication for couples, managing emotions, taxation, and the ABCs of laboratory research. The weekend will end with a lecture by Dr. François Émond on emerging treatments.

There will also be a special program of activities for children age 6 to 17 to help them understand their parent’s illness and bond with other children and teens who are in a similar situation. Discussions, symptom simulation, improvisation, quizzes, drawing and crafts are on the program.

For the full weekend program and registration information, visit mssociety.ca/qc/espoirfamilleEn.htm.

Hurry, space is limited!

No Internet access? Contact Mylène Huet at 514 849-7591 or 1 800 268-7582 (toll-free).

The Quebec Division of the MS Society thanks the sponsors of the 2013 congrès Espoir famille: Biogen Idec, EMD Serono, Genzyme, Novartis, Teva Canada Innovation and the Fondation Jacques-F. Gougoux. MS

The 22nd congrès Espoir famille

The second Summer Camp for adults with MS was held at Camp Papillon in Saint-Alphonse-Rodriguez, in the Lanaudière region, from August 25 to 30, 2013.

This camp is for people who live in long-term care facilities or need home care. Attended by 24 campers from all parts of Quebec, the camp provided an opportunity to enjoy lovely lakeside scenery, as well as adapted activities that the campers no longer believed possible.

The camp also gave natural caregivers a week’s respite and the reassurance that their spouses were in the capable hands of qualified staff and in a safe, accessible environment.

We would like to thank the FMSQ Foundation for its generous donation, which enabled us to offer this camp free of charge and cover the campers’ transportation costs.

We hope to be able to obtain the necessary funding to offer such wonderful holidays to other people with MS. MS

Dr. Gaétan Barrette, President of the Federation of Medical Specialists of Quebec (FMSQ), with Louis Adam, Executive Director of the MS Society, Quebec Division.

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Twelve years ago, my mother was diagnosed with a chronic disease, multiple sclerosis. Since then, we have been adapting to her condition, which can change from one day to the next. That is what I find the hardest, not knowing if she will be able to make supper or some other ordinary thing. It’s tough.

While reading MS Quebec a few years ago, I saw that there was a camp for children who have a parent with multiple sclerosis. I was young and my mother was afraid that I would become frightened of the disease if I talked to other children about their parent’s condition. I continued to insist on going to camp because I wanted to know more. I wanted to learn more about MS so I could understand my mother’s condition better. Three years later, she let me sign up.

When I arrived in Laval, I saw two children younger than me. At first, I wasn’t happy about it, but I was determined to find out more about MS. When I got to Saint-Côme, I was looking forward to making friends. Fortunately, I had the best roommate!

All the activities for learning about MS and the sports activities were well adapted for children of all ages. I adored the camp counsellors and chaperones who were always there for us. At the end, in the bus, we were sad to leave. We’ll keep the memories always.

Since my stay at camp, full of surprises and discoveries, I am more reassured about the disease and I understand better what my mother is feeling.

I am hoping to go back next year! MS

Report on the MS Youth Summer Camp

Valérie was named an outstanding camper.

Me Paul Archambault at his last concert on October 15, 2011. Me Paul Archambault passed away on April 19, 2012.

Me Paul Archambault: a kind-hearted manWe would like to acknowledge the outstanding contribution of Me Paul Archambault, who raised nearly $60,000 for the MS Society. His choir, Les coups de chœurs de Maître Paul, has always charmed us with their singing and musical diversity. We will all miss this great volunteer: we were fortunate to have him with us in the fight against MS. MS

Thank you to our generous sponsors, who enabled 60 children age 7 to 17 to attend the 2013 MS Summer Camps free of charge: Fondation Club Richelieu Montréal, Fondation Jeunesse-Vie, Velan Foundation, Woods s.e.n.c.r.l., Jonah Hoppenheim, Fondation Jean Dupéré, CIBC Children’s Foundation, Zeller Family Foundation and the Quebec Ministère de la Famille.

By Valérie Dollo, age 12

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MS WALK

Mobilizing to Beat MS

As I write to you, one year, almost to the day, has gone by since the day I learned that my 18-year-old daughter had multiple sclerosis. It was late one gorgeous Saturday in July when I drove her to the hospital to have her vision checked; two and a half hours later, we came out again with the brutal diagnosis of multiple sclerosis.

After a sleepless night spent trying to read everything available on the Internet about this disease, I was devastated. My daughter, on the other hand, was still blissfully ignorant of the consequences of the diagnosis. Seeing her living life with a smile and continuing to work as a camp counsellor between her cortisone injections made me want to get up and do something to support her. I had to help her; I didn’t yet know how, but it would be with all my heart and all my head.

Difficult months went by. My daughter had another attack less than two months after the first one. The many MRIs she had showed new lesions each time. The first drug didn’t really work in her case, and we had to learn to live with a hard reality: no cure for MS exists yet. And there was nothing I could do about it.

At least, that’s what I thought until I met some researchers at the Montreal Neurological Institute and Hospital, where my daughter was taking part in a research project. These researchers and their teams are working tirelessly to find answers, and they need money for their research—and that, I can help them with!

I’m lucky enough to work for a large corporation, Air Liquide Canada (ALC), that provides financial support each year for an organization in the health care field. I suggested that it support the Multiple

Sclerosis Society of Canada. The management team enthusiastically agreed and committed to double the money raised, up to a maximum of $25,000.

I’m very proud to be able to say, mission accomplished! My colleagues and their families and friends mobilized like never before in the history of ALC: over 200 participants in the MS Walk joined ten teams across Canada, from Alberta to Newfoundland, and raised more than $70,000.

Above and beyond the money raised, this mobilization created a space for some very comforting and enriching discussions. My colleagues supported my daughter and me with their encouraging words and their empathy. Others opened up and told their own stories about family members with MS, whom they had been supporting for years or whose diagnosis they’d just learned about. Finally, some of them have MS themselves and frankly expressed their appreciation for the collective effort made by Air Liquide Canada’s employees.

Now it’s my turn to thank them all publicly. When I think about last July, I can’t help crying, but the solidarity my colleagues, relatives and friends showed at the MS Walk makes me feel better. MS

Anne-Sophie Tétreault, Team Leader, Air Liquide Canada, 2013 Montreal MS Walk

On May 26, thousands of walkers got together simultaneously in 22 cities of Quebec to participate in the 19th MS Walk. Thanks to their efforts, nearly $1,200,000 was raised for the benefit of the MS Society. Many thanks to all of our walkers, volunteers and donors! MS

Anne-Sophie and her daughter at

the Montreal MS Walk

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June 1st was a beautiful sunny day for the 3rd annual Tournée de l’espoir – À moto pour Monique et Sophie Thibault. One hundred motorcyclists rode more than 243 km and raised $100,000. Thank you to Sophie Thibault for her unconditional support, and thanks to the participants and the dedicated members of the organizing committee. MS

Held in the splendour of the Bois-Francs and Chaudière-Appalaches regions during the last two weekends in August, the 24th MS Bike Tour was a real success! The weather was perfect and nearly 1,200 participants raised $1,255,000! We owe this success to the cyclists’ determination and sincere dedication, as well as to the commitment of such esteemed partners as Medavie Blue Cross, the host of the event. Thank you to everyone! See you next year! MS

At the 18th MS Golf Challenge on July 8, 55 golfers met the challenge of playing 100 holes in one day at the Château Bromont and Waterloo golf clubs. The event raised $275,000 for the MS Society. Our thanks go to our honorary co-chairs, Jocelyne Cazin and Paul Balthazard, our spokespersons, comedians Dominic and Martin, and to all the participants for their generosity. MS

On May 24, nearly 450 guests gathered at the Hyatt Regency Montreal for the WAMS gala luncheon to celebrate the successful career and charitable commitment of Anna Martini, President of Groupe Dynamite. This successful event, hosted by TC Transcontinental, in addition to the 2012-2013 WAMS charity cocktail receptions, raised nearly $194,000 for the MS Society. MS

On August 22, Canadians across the country visited A&W to eat a Teen BurgerTM so that A&W would donate $1 to the MS Society for every Teen BurgerTM sold. Prior to that day, a social media blitz publicized the event and invited people to participate. Thank you to the entire A&W team and to everyone who supported the A&W Rendez-vous to end MS! MS

The MS Carnation Campaign, held throughout Quebec on May 9 to 11, was once again a resounding success. With the help of many volunteers at hundreds of points of sale and thanks to the generosity of everyone who bought flowers for the occasion, $430,000 was raised. Many thanks to all. See you next year! MS

MS Events

Upcoming MS Events

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